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You're Not Alone: How Mothers of Children Born with Rare Condition Comfort and Support Each Other on CarePages.com
Date:3/6/2008

Young Boston woman shares story of firstborn son's ordeal with omphalocele

CHICAGO, March 6 /PRNewswire/ -- "Something's wrong with your baby."

Words a pregnant woman dreads to hear. Especially when her doctor says that "something" is called an omphalocele, which means her baby will be born with some of his or her abdominal organs (e.g., liver and intestine) outside of the body protected by a membrane sac.

Sarah Doyle, 29, and her 32-year-old husband Mike received this news in December 2006 when she was 19 weeks pregnant. In March 2007, one month before her scheduled C-section, she started her CarePage for her son Aidan. She soon discovered a community of support for a harrowing ordeal, which finally is nearing its end.

"Before I knew it the site had 100 visitors and it's now over 300, and we've been overwhelmed by their kindness, encouragement and prayers," she says. "I also found other mothers of children with omphaloceles in the CarePages directory. My goal is to use CarePages and our email support group, Mothers of Omphaloceles (MOO), to help other parents understand their options and realize they're not alone."

Aidan was born April 11, 2007 and has spent his entire life on a ventilator in intensive care units, mostly at Children's Hospital Boston an affiliate of Harvard Medical School. Soon after his birth, doctors found that he actually had Pentalogy of Cantrell, an extremely rare birth defect (approximately 5 out of every 1 million births) that causes defects involving the diaphragm, abdominal wall, pericardium, heart and lower sternum.

"Aidan's heart fell through a hernia in his diaphragm, and ended up in his abdomen, covered only by skin. We could see it beating," says Sarah.

The Pentalogy of Cantrell defect is usually fatal, and Aidan had many close calls in the early months, including turning blue on several occasions. Sarah became quite knowledgeable about her son's birth defects, and began to realize that many parents were unaware of recent advances in the treatment of omphaloceles.

"The majority of 'O' babies do very well, but many of our new CarePages and MOO members often comment how quickly they were told to terminate their pregnancies," she says. "Our goal is to inform the public that they should not lose hope after the diagnosis of an omphalocele because good options are available."

After exhausting all conservative approaches to treatment, the Doyles concurred with their physician late last year that surgery was the only option. Starting December 3, Aidan had seven surgeries. Most of that time he was heavily sedated and paralyzed, his muscle and fascia sutures hung from the ceiling to stretch them in order to close the defect. The sutures were so taut that Aidan was nearly levitating off the bed. On Christmas Eve, the Doyles got the news that Aidan's belly was finally closed.

Mike wrote on his CarePage that afternoon, "Sarah and I will have our little boy back for Christmas. It's the most wonderful thing I've ever experienced in my life."

Aidan's health has continued to improve, and, in early February, Sarah was able to hug him for the first time. If all goes according to plan, he will be home for the first time later this month.

"We've received such a tremendous outpouring of support from family, friends and some amazing people we've met only on CarePages," says Sarah. "Many of the MOO parents, including us, have opened our CarePages to others whose children were recently diagnosed with an omphalocele to give them some idea of what to expect. Journaling in CarePages also has been therapeutic, and our entries provide a valuable record of all his medications and treatments.

"I stay in touch with parents of omphaloceles through CarePages and MOO. I'm inspired by Aidan and this whole experience to give back to others. People tell me I've already earned an honorary degree in nursing and I might go into this field when Aidan gets a little older. Right now I can't wait to wake up every morning in our own home and see his smiling face."

CarePages.com facilitates emotional support during a health journey by providing free, secure Web pages that enable patients and caregivers to communicate and connect online with their own social network and to tap into communities whose participants are experiencing similar challenges. Nearly 700 healthcare facilities in North America, including Children's Hospital Boston where Aidan received his care, currently offer customized versions of CarePages.com to their patients as part of their patient-centered care.

"I know what it's like to go through a healthcare crisis, and it's impossible to overstate how much emotional support means in such situations," says Dr. Sharon Langshur, the founder of CarePages, whose son Matthew had multiple surgeries and hospitalizations soon after his birth. "Our members constantly tell us how much they appreciate these personal connections, and more and more studies are showing that they also contribute to positive health outcomes."

About CarePages

CarePages.com is the largest online community of people helping each other cope with the emotional challenges of a medical situation. More than three million CarePages.com members have used its free, patient-centric web pages to communicate and connect with each other, plus its unique resources to guide them through the experience. In addition, customized CarePages are offered by nearly 700 U.S. and Canadian healthcare facilities. CarePages, Inc. is part of Revolution Health Group LLC, whose goal is to help consumers make informed choices and put them in control of their health decisions through the cornerstone of its efforts -- RevolutionHealth.com. Together, these services address both the emotional and informational health care needs of its members. For more information, please visit http://www.carepages.com.


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SOURCE CarePages.com
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